A drug to CURE ME/CFS (and Long Covid) one day? Introducing MITODICURE!

[@MyFriendPeter]

Never say never as they say. Its heartbreaking and criminal that so little is invested into research for this debilitating ilness. I hope with all my heart that investment is found especially how taxes etc are so massively wasted by government. Thank you as always for fighting the good fight

[@me-cfs-strategiesforhealing]

Thank you for the kind words It’s unreal how the very sick are just sidelined. If it happened with any other disease with such a severity burden, there would be public outcry What a world

[@MyFriendPeter]

@@me-cfs-strategiesforhealing yes it truly is criminal. Even more so with the undeniable rise after COVID showing it is a real severe illness, yet it is still pushed to the back burner and undermined.

[@OscarPerezPousada-sn2do]

This is incredible! Thanks for posting. Some key points for anybody who wants a summary: • research has found patients with ME have dysfunctional potassium - sodium pumps which are part of the mitochondria of every cell meaning that the cells are becoming flooded with too much sodium which also leads to a build up of calcium. The cell becomes dysfunctional and can’t adjust when a patient exercises, leading to a crash. • Mitodicure are working on developing a pill which will address the faulty pump, making PEM impossible. They hope that if it’s impossible to crash that the body will then be able to heal itself.

[@me-cfs-strategiesforhealing]

Cheers and great summary!

[@curtiste3235]

Very nice summary. Thank you! 😊 So helpful for those of us with Fibro-brain.

[@c-p1976]

WOW! I hope and pray this is a real thing! The best news I've heard in two decades of coping with this illness!

[@Si-Toecutter]

Thanks for your channel, it's giving me hope for my son

[@me-cfs-strategiesforhealing]

Thank you, that means a lot to hear

[@davidkohl8962]

This is amazing news.. please let it be true 🙏

[@me-cfs-strategiesforhealing]

Hopefully…there must be a wealthy benefactor out there who’d like to take it on

[@NikkoYM]

In the news a few years ago: Warren Buffett's wife gets requests from people for financial help. They read through all sorts of letters and choose whom to help. This was about 10 years ago, so I'm not sure if they're still doing this. I think I saw it covered on the PBS Newshour. Maybe if there was a collective effort from the researchers, etc. they could try and contact them. (Or maybe the Bill and Melinda Gates Foundation). I just remember seeing this about the Buffetts on PBS.

[@joredfearn1]

Thanks so much for using some of your precious energy to create this and share. Really positive news. Actually gave me goosebumps / nearly made me cry when you spoke about the pill's projected mechanism resulting in PEM being impossible. And therefore taking that stress of the body to actually heal. Imagine!!! Let's manifest this!

[@me-cfs-strategiesforhealing]

Thank you very much! Likewise, this is the pill is what gives me the greatest hope. But, as always, ME/CFS and money for funding is tricky to come by. But let's indeed manifest it and if you happen know of any billionaires, maybe mention it to them!

[@magdaismail4595]

Incredible news 🎉 fingers crossed 🤞🏻

[@lmh-9367]

Hey I remember you :) I watched your pots videos years ago. You helped me a lot!

[@me-cfs-strategiesforhealing]

Hey, thanks! Glad to hear that those videos helped you out. Hope the new round of videos can be of interest to you as well, if needed.

[@AhmedHOmar-vz4qz]

There's also some good news from Argentina, there's a drug called rintatolimod, As of 2022, it was approved in Argentina and is ready to "Launch pending FDA export authorization"

[@Anchor7]

Isn't that genetic for Ampligen? Unfortunately Ampligen hasn't shown to help much from what ive read

[@simonpkershaw]

Thanks for pointing me at this, it does sound like an interesting approach that demands further funding, getting a drug created is one thing but it’s entirely a different league to get it through trials and approval, patients funding it is nowhere near adequate. I’m thinking about the funding though, there are people looking for this because another line of lucrative drug is in trouble!!!!

[@me-cfs-strategiesforhealing]

That's exactly the problem - the funding. Perhaps in any other illness, it would be a different story, but it is just hard to get the money in ME/CFS. It would help with post-Covid ME/CFS as well (and of course post 'poke in the arm' ME/CFS) so perhaps emphasising the Long Covid aspect more would help him in trying to find the funding.

[@Anchor7]

Although I don't know Billionaires, I do know people with deep pockets who may be interested. How do I get ahold of Prof Klaus?

[@me-cfs-strategiesforhealing]

That's brilliant. Write to me directly (via the contact form on my website which is just my name - Patrick Ussher) and I will put you in touch with Klaus. I'm in contact with him often.

[@Anchor7]

@@me-cfs-strategiesforhealing hey there, I will reach out over the weekend. Thanks!

[@me-cfs-strategiesforhealing]

Cool, look forward to hearing from you

[@AnnikaPostVac]

I have MECFS from the COVID vaccine im bedbound now for 4 Months im 25 years old from Germany

[@StreetHawk77]

Fingers crossed, although if BC 007 is anything to go by we'll have a very long wait

[@me-cfs-strategiesforhealing]

That might well be the case unfortunately

[@maricargarcia3074]

When this it's available.​@@me-cfs-strategiesforhealing

[@me-cfs-strategiesforhealing]

It has to get funding first. Even with that, medicine moves slowly. It's years away yet I'm afraid.

[@maxwassermann3171]

I really hope that BC 007 was just a very bad example.

[@paulssss5463]

@@maxwassermann3171 why is it a bad example? If BC007 works, it may well take 3-5 years

[@DanielleLegacy]

So, how do we volunteer to be in the trials? I'm in the US. I know this is wishful thinking, but thought I'd ask anyway.

[@me-cfs-strategiesforhealing]

Hi Danielle. It needs to be funded first and then there may be some announcement about trials. However Wirth is connected to Charite University Berlin which has a lot of ME/CFS patients. My guess is that that would be the cohort used (but I don't know)

[@lessons9745]

Very interesting to hear what's going on from across the pond .Here in the USA we have Dr David Systrom who has done iCPET testing and found preload failure in those with ME/CFS/POTS He recommends using more salt and compression stockings plus Mestinon ,LDN, Fludrocortisone,midodrine and beta blockers .He believes the preload failure that presents without intrinsic heart or lung disease is caused by autonomic nerve dysfunction ,low blood volume ,mitochondrial issues and even shunting issues . A cure would be nice ..but how many things have an actual cure ? Hope you are feeling OK today Patrick !

[@lessons9745]

I wanted to add that ever since I got "pots " my calcium levels rose to the high side of normal or a couple above normal .

[@me-cfs-strategiesforhealing]

Yes, I’m aware of Systrom’s work and klaus Wirth also includes it in his hypotheses. So many vicious cycles ongoing in the illness. Time will tell if mitodicure is powerful enough to reduce the load enough if the body can then heal itself For now we do the best we can

[@davidkohl8962]

@@me-cfs-strategiesforhealing Are there any clues as to what this drug actually is and any potential supplements that replicate its effects?

[@me-cfs-strategiesforhealing]

There's some speculation on the phoenix rising forum if you want to search for mitodicure there. Apart from the fact that it will normalise the cellular sodium overload, I don't know. I've looked but not found anything :)

[@lessons9745]

@@me-cfs-strategiesforhealing Lots of vicious cycles ! I was listening to this hour long talk yesterday with Lauren Stiles and Cort Johnson ...and Lauren mentioned GLP and dysautonomia so I looked it up .. GLP ( glucagon like peptide ) is released 10 min after eating ..it activates nerves in the gut ... sympathetic nerves that help control insulin and peristalsis . GLP also sends messages to the brainstem and it can cause tachycardia because it decreases parasympathetic activity .GLP also influences kidney function ,stimulating diuresis and lowering blood pressure ... ....That's interesting and gives a lot of insight into lots of familiar symptom complaints !

[@LillyLbs]

Hello , I live in Germany . I has EBV and maybe long covid , CFS, I ve tested my mitochondrie and there are no optimal functional . I would like know more about that. I hear many thing about treatements, clinical try... but nothing come. It s always hope and disapointed, ex : IVIG, BC007 , Bruce Patterson protocol.... When come all this thing ? Are there still clinical try. Can I in contact with Herr Klaus or a clinical ? Best regard

[@me-cfs-strategiesforhealing]

Unfortunately, Klaus Wirth still needs funding for a trial. Keep an eye on Mitodicure's website for updates.

[@SZ-ed2gt]

Es gibt keine Behandlung bis zum Abschluss der Phase 3. Es wird 5 bis 10 Jahre dauern bis alle gesetzlichen Vorgaben für neue Medikamente erfüllt wurden. Es ist eine großartige Nachricht, dass ein Pharma Gigant wie Sanofi Millionen in dieses Medikament investiert. Aber bis dahin gibt es keine Option behandelt zu werden. Tut mir leid. Das Gute ist, wenn das Medikament funktioniert, wird es eine Methode geben, dass Patienten und zukünftige Opfer dieser grausamen Erkrankung eine teils oder vollständig wirkende Behandlung bekommen. Alles erdenklich Gute für alle ME/cfs Patienten.

[@DanielleLegacy]

My question: how do we know that the sodium/potassium pump dysfunction is what's causing PEM?

[@me-cfs-strategiesforhealing]

That's a great question, Danielle. It's not definitively proved yet. In fact, as Wirth's pill would be correcting the dysfunction, it the response to the pill that can ultimately prove the theory one way or the other. What we do know however is that high intracellular sodium is an issue in ME/CFS and a dysfunctional sodium-potassium pump will be the reason for that. If we have have intracellular sodium, then you tend to get high intracellular calcium as well and that makes the cells even more dysfunctional and the muscles more painful. So the pill would potentially correct the high intracellular sodium and resulting high intracellular calcium.

[@DanielleLegacy]

@me-cfs-strategiesforhealing okay, gotcha. My understanding was that the muscle burning was caused by acidosis. Ron Davis' crew believes the problem is a shunted Krebs cycle. They say the resulting anaerobic metabolism is to blame for the acidosis. Is the mitodicure group's theory opposed to Ron Davis' research, or do they believe this potassium/sodium pump issue is just adding to the muscle pain? Thanks so much for the response!

[@me-cfs-strategiesforhealing]

Indeed, Wirth includes the acidosis part. The sodium-potassium pump issue is just one part of the cycle of dysfunctions at a cellular level but, for Wirth, the most important one to target. There is a KZbin channel for The Irish ME Trust (channel is called 'ME Ireland'). There you can find a talk I gave in January of this year (titled something like 'ME/CFS and hypoperfusion'). That outlines a bigger picture view of Wirth's research and where the cellular issues fit in. Interestingly Davis also suggested the excessive cellular stress of ME cells in response to a hypertonic solution as a biomarker for ME/CFS. That ties in with the idea of high intracellular sodium being at play.

[@DanielleLegacy]

@me-cfs-strategiesforhealing thanks so much for the response! I'll definitely look up that video.

[@simonpkershaw]

Further, just listening to mr Wirths 2023 presentation….does this guy know that he is talking about the key to most of the mechanisms behind long covid, does he know the spike protein appears primarily toxic to endothelial cells? Correction yes he does!!

[@tomreid8598]

Would you condiser this a compeditor to Asha-091? Both very early stage mitochondrial drugs. Both likely to be 15-20 years away, if they work. Both providing a glimmer of hope.

[@me-cfs-strategiesforhealing]

Thanks I wasn’t aware of that one but looks like they could well be competitors. But all so far away, as you say

[@klinikat5313]

There is BC 007 in phase 2 trial !!!

[@me-cfs-strategiesforhealing]

Waiting patiently!

[@klinikat5313]

BC007 cancelled 😢😢😢😢😢

[@me-cfs-strategiesforhealing]

Oh my, what terribly sad news. I just looked up their update following reading your comment.

[@klinikat5313]

@me-cfs-strategiesforhealing yes it is. Big Pharma should invest, but they need profit calcs first = feasibility and unfortunately nothing happens so far.....

[@SZ-ed2gt]

You can find a presentation of Prof. Klaus Wirth here: " Prof. Klaus Wirth - Vortrag auf der ME/cfs - Fachtagung 2024 " Fagitatio e.V. ME/cfs - Fachtagung in Fulda Germany Sorry, in german.